First of many....

My Dear Owen,

I don't think there will ever be any words to express to you how much I love you. The day you were born, it felt like my world made sense again. The moment our eyes met, I knew you were sent to heal my broken heart.  I remember holding you for the first time and studying your face, your eyes and your tiny little hands and I knew in that second that you and I would have a very special bond.

I cannot believe we are just days away from your very first birthday. This year has been so hard on our family but the bright spot in all of that was you. Everything you've endured in your first year of life is more than anyone should ever have to in their entire life. You are strength personified. I am so proud to be your Mother!
Some day I will sit down to tell you the story of your first year and everything you've been through.

Some day I will have to tell you about the tough road you had and the Doctor's we had to see, the tests you had to have and the worst moment of all of that - your surgery. Those were the hardest moments for Daddy and myself. We love you so much and we never wanted you to have to endure any pain but we also knew you deserved to live the life of any normal boy and the surgery was the only way to do that. We are so proud of you and everything you've overcome. You did it all with a smile.

So many people who have met you over this past year always say the same thing "He's so happy." That's the honest truth. You're always smiling and laughing. You absolutely love your big sister and I swear she is the only one who can get you to do those big belly laughs that we all love so much.

You are the piece that completed our family and we love you so much. This is just the first of many Happy Birthday letters I will write to you. There were some days when I felt like this day was so far away and now here we are. I am so proud of you baby boy and remember one thing, so many people love you but no one will ever love you quite like your Mama does.

xoxo,
Mommy

3 month check-up

Wow, has it already been 3 months (now almost 4) since my little man's surgery?!? I waited anxiously for that day to arrive and now it's just flown by since.

We made the trip to Akron Children's on Wednesday for his check-up with his neurosurgeon, Dr. Hudgins. I always get a little nervous before these appointments. I guess it's that fear that they'll say things aren't progressing like they hoped and he'll require another surgery.

I am very happy to say that was NOT the case and he got a great report from Dr. Hudgins. He is very happy with the progress Owen has made since surgery and said things should continue to smooth out over time. He blew me away when he said he is okay with moving to yearly appointments. I swear he saw the shocked look on my face when he said that. I fully expected we'd go every 3 months for the first year and then after that we'd switch to yearly appointments. I didn't know it would happen this fast!

But... I'm not complaining. Not at all. As much as I love Akron Children's and the amazing staff there, it's been a long and exhausting year. I am relieved and happy to stop making so many visits to the Doctor.

Owen has one more check-up next month with his plastic surgeon. I hope he'll give him another great report and switch him to yearly appointments as well. That would be amazing!

I probably sound like a broken record when I say this, but I'll say it again, I am so beyond proud of my little boy. This surgery hasn't changed him one bit and he hasn't let it slow him down at all. I am so thankful for every day I have with him. He's a very special gift to our family. <3

Craniosynostosis Awareness Month

Every 1 in 2,000 births a baby is born with Craniosynostosis. On September 21st, 2010 at 5:31 pm, my son became that one. In the moment he was born I couldn't have even imagined the road our lives would take over the next several months. 


It became pretty clear, within the first 2 months of this life, that something didn't look right. I kept looking at his forehead, examining his head shape, and wondering why things looked the way they did. I would google everything and when I typed in "slanted forehead shape" one of the first things that popped up was Craniosynostosis. I had never even heard the word the before and I assure you I couldn't even come close to pronouncing it. I clicked on the link and read the signs of it and my heart sank. I knew right there, in that moment, my son had that condition. We took him back and forth to the pediatrician all the time and he kept saying it was just positional flattening and he would be fine. If it wasn't "better" by 9 months, we'd consider helmet therapy. I tried to listen to him and I would tell myself "he's the professional... he knows what he's doing..." but that feeling continued to eat away at me and I knew I couldn't just sit back and wait.


The day the Neurosurgeon picked up Owen and immediately said "right coronal cranio" it was like the air was sucked out of my lungs. I had been bracing myself for months to hear those words and in my heart, I knew that's what it was, but actually hearing those words - there's only one other time I was ever left breathless like that - and that's a moment in my life I wouldn't wish upon anyone.


In the days and weeks leading up to Owen's surgery I constantly kissed his sweet head and I would cry. I cried all the time. He was perfect to me, Craniosynostosis or not, I loved him no matter what. I knew the surgery was critical to his well-being and it needed to be done to ensure he would grow normally and live the life he was supposed to. But every time I kissed his sweet head, I prayed to take this condition away from him. Give it to me. Make ME have the surgery. Not him. I would've done anything in the world to fix this for him without him having to endure one ounce of pain.

I love all of my kids the same but each of them also hold a very special place in my heart. There are no words to describe the love I have for my kids. Owen is my hero. What he has gone through in his short life, he has done with a smile. Everyone I encountered in the time before his surgery would tell me how resilient kids are and how fast he would bounce back. I thought they were just being polite, saying comforting things to a person who they could tell was clearly a wreck.


They weren't lying.

That little boy kicked some serious Craniosynostosis butt. 


I am not happy my son has this condition and I'll spend forever wondering "Why him?" Didn't God know I had already been through enough with the stillbirth of my daughter just two years ago? But one thing I will say is, while I am not happy, I am PROUD. 


I ask you, or anyone else who comes across this blog, to take the time this month to spread the word about Craniosynostosis and early detection. If undiagnosed - my son would have eventually lost his hearing, maybe his vision and he definitely would have had developmental delays due to pressure on his skull. 


My son is a warrior and he doesn't even know it yet. Some day I'll share his story with him and I will tell him how he showed more bravery and courage than anyone I've ever met.


He is my hero.

I am so thankful Craniosynostosis can never take away that precious smile.

Someone I love....

has craniosynostosis.

Owen is now 11 weeks post-op. When I say he's doing amazing, even that word doesn't seem like enough. There are no words to describe how grateful we are that he is a happy and healthy little boy and he's thriving.

He's trying to walk now! I can't believe it. He'll be 11 months on the 21st. He can cruise the furniture like a champ and he can crawl up the stairs (with supervision of course..) so fast. He's a very quick kid... and very determined too! I just love him. He wears me out but he makes every day better just by smiling at me.

My son's case of craniosynostosis is considered "sporadic," meaning there is no known reason why he developed it. Often craniosynostosis is associated with a syndrome or caused by a genetic defect. Owen has no other relatives with his condition. He just developed it and we don't know why. I look at him and I'm just so thankful that he's through the worst of it and he can grow to be a happy and healthy normal little boy. My heart breaks at the thought of other families who aren't as fortunate and whose child doesn't just have to battle craniosynostosis but has to battle so many other things too. 

If you can, take a moment and visit to very amazing and generous organizations. Cranio Care Bears and Cranio Angel Network. Both could use your support to spread awareness and to help many other families who will face the long journey with their child's diagnosis and who will become a member of the cranio family. <3

Milestones

 Owen is officially 2 months post-op, actually heading into the 3 month mark. August 27th will officially be 3 months since his surgery. He's turning 11 months old soon and just blowing me away with his growth. Every new milestone is very bittersweet for me - one because of losing his sister 2 years ago and two because, had this condition gone untreated, he may never have reached these milestones.

 I am thankful beyond words for the miracle his surgeons were able to perform on him. There just aren't enough words to express my gratitude. I love each of my children the same but then they also each hold a special place in my heart. My oldest - she made me a Mother. She taught me what unconditional love is. My sweet Audrey, she's my Angel. Plain and simple. She taught me how to pick myself up when I didn't think picking myself up was even an option. Then there is Owen. He's the rainbow at the end of a very dark storm for me. His smile melts my heart and gives me that feeling I never knew I could feel again - happiness.

 Every time I look at his scar, it breaks my heart to see what he had to endure just to grow and be a normal kid like everyone else. No baby should ever have to go through what our cranio babies have had to. When the OR Nurse came to us and had to take him back for surgery, part of me wanted to grab him and run and never look back. To me, he was perfect. I love him no matter what. But my heart knew that he deserved a chance at a better life and if he didn't have the surgery, he wouldn't have that. My love and strength (that I credit to my Angel giving me) allowed me to hand him over to the OR Nurse and just.... trust.

If you come across my blog because your child has been diagnosed with craniosynostosis, I want you to know a few things... One, it's OKAY to be scared. It's okay to cry. Two, babies are so resilient. Your little one will blow you away with how well they recover from this... and most importantly, every new milestone they reach is another confirmation that making the decision to do the surgery is the RIGHT choice.

Today is my 25th birthday and I've spent so much of my time today reflecting on my life and looking at my beautiful children, focusing on the wonderful things that I have been blessed with in my life. <3

8 weeks/10 months

Wow - today is 8 weeks since Owen's surgery! I can't believe just 8 weeks ago we were sitting by his side in the PICU. Today he is now 10 months old (as of yesterday!) and is doing amazing.

I am so thankful for every day I have with my children. We often take life for granted and we often think life is going to be sunshine and happiness, but sometimes it never quite works out the way we expect.

Last week Owen had a check-up with the plastic surgeon. He is very happy with Owen's progress. There is still a slight concern with his left head tilt but we've increased the neck stretches at home. His therapist feels happy enough with his progress and said the next time he goes may be the last time! I couldn't believe it when she said it. Wednesdays for the last 6 months have consisted of me coming home from work, picking up little man and going to therapy. It's become a part of the routine. I'll be glad when the time comes for him to "graduate" from therapy, but I'll be a little sad too. His therapist was a HUGE part of us pushing the issue with his skull further that ultimately lead to his diagnosis of craniosynostosis. The next check-up with the neurosurgeon is September 7th and the plastic surgeon's next check-up will be October 27th.

I'm starting to get into party planning mode. Addison's 5th birthday is next month on the 25th and Owen's first comes the month after on the 21st. What was I thinking having their birthdays so close? I'll barely have recovered from Addison's party and then it will be time for Owen's.

Owen is cruising around the furniture more and more and now has started clapping. He's quite the ham and has the most handsome smile. He can melt my heart with one toothy smile and he knows it too. :)

I have several new friends I've met through the cranio community whose children have had surgery in the recent weeks. It breaks my heart every time a sweet baby has to go into surgery but when the moment comes that I hear they made it out of surgery okay, my heart swells with happiness. Our babies have been given a chance at a normal life and to have the medical technology now to do something about this - it's just amazing.

Absolutely amazing.

5 weeks

Owen is now 5 weeks post-op! It seems like time is flying by. I can't wait until we can look back and say "Wow, it's been 1 year.." etc... May 27th is a day that will forever be etched in my memory. Everyone has days in their life that they can't forget. That will most certainly be one of them.

Little man turned 9 months on the 21st of June. He had his check-up on Monday the 27th. He is a happy and healthy 22 lbs 7 oz and 28 inches long. His pediatrician is very happy with his development and where he is at with his milestones. We're so blessed that even with all of the obstacles he's faced - he's met all of his milestones.

He has a check-up with the plastic surgeon on July 14th. Just to check where his incision is at with the healing process. He's still going to physical therapy once a week. His therapist mentioned that we might be switching to bi-weekly appointments pretty soon. She's very happy with his progress. He still does the left head tilt but it definitely seems to be more of a habit thing than an actual issue. She said she'll see him for a few more weeks on a weekly basis and then we might be switching to the bi-weekly appointments.

We are so happy with the wonderful team of Doctor's that Owen has surrounding him. His new pediatrician is amazing, his plastic and neurosurgeon's are just incredible and his physical therapy... I just adore her. There aren't enough words to say how blessed we feel to have so many people who care about our son and his well being.

 This was 4 weeks post-op at the water park :)

My princes

 My family <3

 5 weeks post-op

 Love his gorgeous blues

Owen Hunter 9 months old